Snapshots of Dementia: Doctor, Doctor

Posted by Marti on June 4, 2020 in Dementia | 13 comments

Tom and I sat in the stiff-backed chairs at the neurologist’s office. After months of delay, he had told his primary care doctor he might have some memory issues. That doctor scheduled an MRI and referred him to a local neurologist.

A few months before, I had taken a full-time job with a publishing company—the first time I’d worked outside the home since our oldest daughter was an infant. I had homeschooled our five children for a total of 21 years and, when our youngest was a preschooler, begun a freelance writing and editing career (see the rest of this website if you want to know more).

But now our two youngest daughters were in college. I had no desire to leave home, but I felt a new compulsion to get a “regular” job. Deep down, I wondered how much longer Tom would be able to work, and although money had never been my primary motivation, I realized a regular salary and benefits might help.

I had no way of knowing how much or how soon.

That day, I took off work to accompany my husband, my only sure way to receive an accurate report.

At the neurologist’s office, Tom was “on” in ways that had become less frequent, charming every office worker and medical assistant. The neurologist, however, was not as easily charmed. For some reason, he hadn’t received the MRI report (although we later learned it showed nothing unusual). He then asked Tom the reason for his visit.

“I’m having a few memory problems.”

The doctor pressed further. “Have they affected your family?”

“Not really. Maybe sometimes.”

“Have they affected your work?”

“No. I have a good assistant.”

“So your memory problems haven’t caused any issues with your job?”

“No, none at all.”

The neurologist asked a few more questions, almost all of which Tom answered much more casually than I would have.

My frustration mounted. How can he say this isn’t affecting his job? I had noticed numerous times when he forgot things or failed to complete tasks. In fact, if it weren’t for his capable assistant, he would never have been able to keep up.

But the neurologist didn’t ask me any questions. When I tried to comment, he pivoted back to Tom. Soon, he began a brief memory test. Tom missed some questions and did well on others. And since the test was short, we got immediate feedback.

“You do have some problems with your memory. Many people have this, and it never gets any worse. I imagine that will be the case with you. Don’t worry. But come back in six months, and we’ll see how you’re doing.”

Although Tom and I rejoiced at what sounded like good news, I felt both relief and concern. Lots of people have this? It probably wouldn’t get any worse? That sounded wonderful. But why had our lives already changed so much?

When I shared these results with our kids, I remember saying, “I’m happy to be wrong. I don’t want him to have any kind of issue. I just hope I don’t find out someday that I was right all along.”

If I had known more about dementia, I would have pressed harder. And if I had known many dementia patients exhibit anosognosia, a condition in which a person cannot perceive their own illness, I would certainly have insisted the doctor listen to my thoughts.

I didn’t know. And we left with no real answers.

If you suspect a loved one has dementia, I urge you to do what I didn’t: Keep asking questions. Become your loved one’s advocate. At the time, I didn’t know enough to effectively carry out this role.

More insistent advocacy on my part would not have changed Tom’s diagnosis. But it might have come sooner and with fewer devastating consequences.

If you have a loved one with dementia, who noticed their symptoms first? Did you find adequate help as you sought a diagnosis? What, if anything, do you wish you had done differently? Your story matters.